Thursday, May 31, 2007

That is the headline of a front page story in today's Boston Globe involving the medical blogosphere's own Flea. Read the whole article here.

Given the recent spate of physician blogs shutting down and controversy over who can say what and where they can say it, this case adds even more complexity to the discussion. The more med blogging continues to emerge as a powerful and persuasive tool, the more we'll see the lines between medicine, law, and politics blur, and the more the idea of anonymity will be tested.

Sunday, May 27, 2007

Chronic illness. As soon as you see the words, you probably think of diseases like diabetes, arthritis, fibromyalgia, or lupus, some of the thousands of diseases synonymous in our cultural lexicon with the phrase “treatable, not curable.” Insulin regulates blood sugar and anti-inflammatory medications target joint pain the way antibiotics maintain health status in people cystic fibrosis or steroids aim to reduce the inflammation in people with Crohn’s disease. None of these treatments rid diseases themselves but aim to reduce the symptoms and the sometimes life-threatening complications of them.

But you already knew that.

Thankfully, the particular nuances of chronic conditions versus acute ones are more widely recognized than ever before. But should the concept of “chronic disease” broaden even further, and if so, do cancer and eating disorders deserve a place in the fold? It’s a compelling question, and one hotly debated in both medicine and politics right now.

From physician interviews on NPR to articles like this one from Salon.com, the recent cancer diagnoses of like Elizabeth Edwards and Tony Snow have made the term “living with cancer” a trendy and oft-published one. If some cancers are the “new” chronic illness, what’s at stake for the patients involved?

Two decades ago, Susan Sontag argued eloquently against the use of metaphor in regards to cancer (required reading in some of my classes), and her notion that to look at cancer through the lens of the military metaphor is a disservice to the cancer patient rings even more true today. If patients fight a "war" against cancer and if they fight hard enough, they win that epic battle, where does that leave the patients who do everything they are supposed to but succumb to lethal cancers anyway? Such a view is too narrow to encompass living with--not dying from--cancer. As Salon’s Walter Shapiro writes,

“What appears to be happening is that medical advances in cancer treatment are removing much of the stigma from the disease. As Humphrey Taylor, the chairman of the Harris Poll, put it, ‘Medically, cancer has gone from a fatal disease to something that is curable -- or something that you could live with for many years and die of something else.’ In presidential-election terms, Taylor said, ‘as long as candidates look vigorous and act vigorous, I don't think cancer will be a problem.’”

Bringing this from the political sphere to the personal, “living with cancer” reflects a reality I know well—it’s a question of sustained treatment and stability, rather than a cure (and, more importantly, rather than impending death). My father has been on maintenance chemotherapy for fourteen years and will remain so for the rest of his life. It helps control the progression of the rare disease that attacks his muscles and spurs the growth of tumors. In that sense, his chemo is similar to the insulin he takes for his diabetes, the statins he takes for his heart disease, the medications he takes for his gout—it treats it, it helps him live his life, but it won’t ever cure it.

He works, he travels, he golfs, and he never misses a chemo treatment so he can keep doing that. Elizabeth Edwards’s plight reflects that of so many ordinary patients—except due to her notoriety, hers affords the rest of us an opportunity re-examine what we think of as chronic illness.

An equally compelling—and, as far as I can tell, much less talked about—consideration is that put forth by author Trisha Gura in her new book, Lying In Weight: The Hidden Epidemic of Eating Disorders in Adult Women . While the age distinction Gura makes (this isn’t just a problem for teenage girls) is important on its own, what really strikes me is her query into eating disorders as chronic diseases: like so many chronic illnesses, eating disorders reflect a combination of genetic/biologic predispositions and environmental variables and often re-emerge in response to emotional triggers.

Rather than considering them “recovered,” patients and physicians should consider women with a history of eating disorders whose symptoms have subsided as in “remission.” Gura supplies ample research on relapse patterns in adult eating disorder patients to help shape this new view on them. She writes,

“These findings suddenly turn the whole idea of eating disorders recovery on its head. Recovery, meaning that the disease disappears forever, is a fallacy. The reality is that time, the length of time a person is symptom-free, becomes important in characterizing a patient’s state of mind, and, by extension, her health.”

The ultimate question is, of course, is it worthwhile for patients to consider certain cancers and eating disorders chronic diseases? Any sort of chronic illness implies ongoing vigilance and maintenance, speaks to periods of exacerbations as well as periods of increased health, and requires certain behaviors or treatments to reach a state of optimal control and stability.

Monday, May 21, 2007

I was out to lunch recently when someone at my table who knew my medical history asked me that. I paused, trying to formulate an answer that was both honest and authentic as well as diplomatic enough to appeal to both sides of the issue since I wasn’t sure of his sensibilities—what surprised me was that my honest answer did that on its own.

“Well, here’s the thing. I wouldn’t be alive today without the help of Western [conventional] medicine, there’s no disputing that. But I’ve used acupuncture in the past for pain and fatigue and had great results, and it’s done wonders for my mother in terms of her shoulder and back pain,” I said.

I told him I knew people who swore by therapeutic massage and other alternative practices, especially for chronic pain and inflammation. Both my parents, recipients of the most cutting edge care in areas like cardiology, rheumatology, and oncology—my father is a walking advertisement for minimally invasive interventional cardiology—also book weekly appointments with an acupuncturist and rave about him.

“I guess what I’m saying is that a combination of both is ideal in my mind. I believe there are limits and drawbacks to conventional medicine, and I believe there are strengths and benefits to alternative medicine that patients should explore. It’s about balance, really,” I said.

For the past few weeks, I’ve been thinking a lot about that conversation and about this notion of balance. It’s only been in recent years that I’ve achieved anything close to balance in my life, having preferred for most of my life to try and do things in spite of my illnesses, rather than in consideration of them.

“Balance” is a loaded term when it comes to chronic illness: balancing the good days with the bad, the acute flares with the low-level hum, the doctors’ appointments with social obligations, the frustration with optimism, the desire to move forward with the awareness that you need to pull back, the momentum of inclusion with the stagnation of isolation. These are the “big ticket” themes, the ones that are at once the most popular to discuss and explore and the ones most difficult to sustain.

And yet there are all the little acts of everyday living, the choices and decisions we’re not even always conscious we’re making anymore that also speak to this notion of balance. I take several medications every day, as I have since I was born and as I will for the rest of my life. I appreciate how these chemicals help manage my conditions. But I also try to ingest things that even out the scale a bit: fresh fruits, huge amounts of greens and fresh produce, lean meats, lots of water, nothing processed, all things that are naturally good for my body. (Let’s ignore the caffeine issue for now, okay? I swear I have cut back, and I drink green tea, too!)

There are days when I do not have the lung capacity or the stamina to go to the gym, and on those days, I do yoga. I love the way it lengthens me, the way it opens up my lungs, how warm and taut my otherwise aching muscles feel. Ironically, what started as my default workout when cardio couldn’t happen has been wonderful for my dodgy lungs.

These things represent balance, but they have become so routine that I don’t stop to see them as such.

The work versus downtime ratio has always been my biggest struggle. Combine a perfectionist workaholic with the attitude of “I’m going to do it just to prove I can, that I’m not sick” and you don’t get a pretty result. I’ve made great strides; no longer do I compulsively look for additional jobs or take on too many projects, no longer do I feel that I “should” be doing more than I am or feel guilty about the choices I’ve made (most of the time, anyway.)

The past few weeks, though, there hasn’t been much balance between work and rest, between deadlines and, well, fun. Since the semester ended I have been plugging away on my book, all day, every day, seven days a week. I’ve plunged into Black Hole mode, only to emerge to attend my fellowship, send the occasional e-mail, or grab a late dinner on a Friday night with my husband—after getting kicked out of the coffee shop where we've both been working when it closed at 9pm.

For the most part, I love every minute of it, the intensity, the focus, the productivity. I apologize sheepishly to friends and family for my absence, and in those moments, I do feel guilty about my lack of balance. But I know it’s only a temporary thing, that in a few weeks I can turn the computer off for a bit and exhale….and I also know that for so many weeks of my life, I have surrendered everything to sickness and hospitals and chaos. Who knows, maybe this period of absorption is just another way of balancing things out…

Friday, May 18, 2007

By now you know I am a collector of rare conditions--sure, people have heard of celiac disease or thyroid disease or various other members of my medical repertoire, but in all my faithful years of watching medical drama--ER, Grey's Anatomy, etc--I've yet to see anyone with PCD or bronchiectasis stroll through the swinging doors of the set. True, I don't catch each and every show, but I still feel pretty confident that for however varied and creative the ailments shown are, none of them belong to me.

Enter last night's season finale of "ER." After steadily declining for several hours in the ER, a hypertensive woman was on the verge of dying when the new chief of staff sauntered into the room and, while the other docs scrambled around, calmly plunged a nameless clear liquid into her IV line. Within seconds, the heart rate monitors stopped their urgent beeping and the woman opened her eyes. Crisis averted.

The doctor refuses to tell the others what the mystery medicine was until the end of the show. As he berates them about their shoddy job taking the woman's medical history, he mentions the woman had been on steroids to treat a bronchospasm two weeks earlier.

I knew right where he was going with this one.

The hormones suppressed her system, and her adrenals crashed. The character of Dr. Abby Lockhart responded by saying adrenal insuffiency was so rare, as if since it was something they never see they weren't accountable for not connecting the dots.

Welcome to my world. I was a little bit excited to see my adrenal issues get some TV time--the only other mention I've seen of adrenal problems was that awful Honda truck commercial where the guy suffers from adrenalitis, only to be cured by a brand new red truck, obviously.

But I also had a tiny bit of sympathy for the doctors who scrambled to figure out what was wrong with me three long years ago when I showed up unable to walk or even move my lips to speak...and a whole lot of gratitude for my rheumatologist, who figured it out as soon as she saw me.

Tuesday, May 15, 2007

Since diabetes and attitudes towards illness are often on my mind, I couldn't resist posting about this article: a Massachusetts man, Gregory Hennick, who is diabetic and uses an insulin pump, was offered a job by Northampton Police Department, which later said "it was forced to rescind the offer after learning that he wears the pump," according to the Boston Globe.

Apparently, anyone using a pump is barred from full-time police work in Massachusetts, yet the same rule does not apply to firefighters or to police officers who switch to the pump after they've been hired.

Let me get this straight...diabetics who manage their disease using the pump are not eligible to be hired as police officers. Those who inject insulin are, depending on the severity of their disease. Yet those who get the job and then decide the pump is a better option are still somehow better qualified for the job than people who used the pump previous to their employment? Here I was thinking that whatever method a patient found most effective in managing his or her disease was a good thing.

Is anyone else struggling to wrap their heads around the misguided logic at play in this policy? It's not enough to treat diabetes as a disability, but to be so arbitrary and conflicting in who is allowed to patrol our streets, protect us from danger, or rescue us from burning buildings is maddening.

Hennick is filing complaint of discrimination on the basis of a perceived disability...I'll try and keep you posted.

Monday, May 14, 2007

While it's great to point out chains and restaurants that have gluten-free menus (oh the ecstasy of choice!), every now and again I like to pay some attention to those restaurants that are especially accommodating despite not being GF. This weekend, we went to a place that had the perfect balance of romance, “safe” food, and interactivity: The Wine Cellar in Boston.

The wine aficionado in me was overawed by the extensive wine list; even my husband couldn’t resist stating “A guy could get in some serious wine trouble here” several times as the night (and the drink tab) progressed.

But as seductive as the wine list was, it was the fondue that provided the real entertainment of the night. I’m the first to admit that when I think of fondue, images of my parents in their 1970s garb of polyester plaid and gargantuan shaded glasses huddled around a pot of bright yellow cheddar cheese come to mind. Okay, so maybe the only used their fondue set once or twice in their early years, but they are the point of reference I had for fondue at all.

Who knew food on sticks could serve as the perfect date night for a celiac girl and her foodie husband? The appetizer course was cheese (naturally), in our case a queso made of cheddar, cilantro, white wine, roasted red peppers, and onions. In addition to the bread, they served potatoes and, by request, steamed veggies. They made our queso with cornstarch, assuring us the only difference was that this GF version might break apart sooner. Our solution? We basically inhaled the entire pot before it even had time to separate.

“Yeah we did,” countered my husband, clearly proud of our prowess, who lives by the motto that there is no such thing as enough cheese.

To our pleasant surprise, the entrees and their assorted dipping sauces were naturally gluten-free. Well technically, my first surprise was that fondue entrees involved anything other than cheese, but once I figured out that we got to select four meats and that everything they came with I could actually eat, our date night got even sweeter.

I’ve talked recently about how much my attitude towards preparing and consuming food has changed—I like everything fresh and healthy, I don’t take shortcuts or eat anything processed or artificial, I am deliberate about what I eat, when I eat it, and how it will make me feel. Part of this is a direct result of getting diagnosed with celiac disease, but part of it is because I married a man who taught me to savor taking things slow, to enjoy cooking as an activity and not merely as the means to supply and end to hunger.

For people who have been working seven days a week for a few months now and needed night to decompress, fondue was the perfect choice. There is nothing more deliberate or conscious than selecting which piece of meat to skewer and place in the steaming pot or broth and deciding how long to let it simmer. Eating a meal piece by slowly-cooked piece like that is an experience that magnifies this approach towards food, and it was fun. Yes, fun. We experimented with all different meat/sauce combinations, we realized that chocolate covered grapes were as delicious as chocolate covered strawberries, and we also realized that when you’re really paying attention to what you eat and who you’re eating with, three hours can elapse and you’d never know it.

Friday, May 11, 2007

A good friend of mine sent me this NYT article entitled “Jury Is Still Out on Gluten, the Latest Dietary Villain” early this week, and ever since then, I’ve read or listened to similar threads on this debate.

(Can I just take one second to acknowledge the overall awesomeness of my friends, who always have rice crackers on hand for me, consider my dietary restrictions when thinking about restaurants, and have been known to show up with GF desserts? You’re celiac experts now, and I really appreciate it!!)

Obviously, there is little debate here for people who have confirmed celiac disease—if we want to reduce symptoms and stop damaging our bodies, we can’t eat any foods that contain gluten. It’s pretty much a non-negotiable.

Luckily, as I’ve mentioned before on this site, finding gluten-free foods and businesses and restaurants that understand celiac disease, is easier than ever before. When I go to PF Chang’s, it’s specifically because there is an entire menu for me to choose from and I don’t need to worry about cross-contamination. When I do my weekly shop at Whole Foods, it’s because I know that whatever my mood or craving, I can find something that is both gluten-free and healthy.

Of course, this increased awareness of celiac disease is also tied to the fact that mainstream society has latched onto the idea that gluten-free living is the way to go. It’s the latest trend, with people ditching office pizza and processed food for GF fare. People with symptoms that resemble those reported by celiac patients who test negative for the disease—they consider themselves as having a “subclinical gluten sensitivity,” according to the NYT article—say they feel better when they go GF anyway. Others report that symptoms of other autoimmune diseases like arthritis decrease once they go gluten-free.

The experts are still teasing out the connection between gluten and the types of success stories non-celiacs trumpet. I’m happy to leave that quagmire to them, but I do think it’s important to consider a very basic fact alluded to in this most recent article, one I’ve been championing for a couple of years now. What if part of the reason people who do not have celiac disease but feel better when they go GF has less to do with their physiological sensitivity to gluten and more to do with the fact that the GF diet is, on the whole, a lot healthier?

Think about all the “staple” foods that contain gluten—breads, pizza, pasta, etc. A huge amount of junk food, from fast food hamburgers or “chicken” nuggets to cookies and doughnuts and fried food, contain wheat or other grains with gluten. Is it all that surprising that if you swap out breads and fast food for salads, vegetables, and un-friend, un-sauced, unadulterated proteins you just might feel better?

Here’s the anecdotal evidence I can offer: two years ago, I convinced my diabetic and otherwise medically-challenged father to go GF for six weeks. I went over the list of “safe” foods, I taught him what to look for when reading labels, and I went grocery shopping with him to help him begin his new lifestyle. I should add here that his diet was fairly healthy to begin with since he’s a diabetic heart patient---lots of fish, veggies, etc, and when he ate starch like wheat bread, pita bread, or pasta, it was usually in moderation.

Within two days of going gluten-free, his body’s demand for daytime insulin dropped by 50 percent. Yes, you read that right, 50 percent. And what’s more, he sustained that decrease over the six weeks. It was a struggle to adjust and he did need a few days to get a handle on middle of the night blood sugar drops, but he lost some extra pounds, had more energy, and needed less insulin.

Does he have celiac disease? No. But did eliminating excess starch and processed food impact his health in a positive way? Absolutely.

Getting diagnosed with celiac disease has totally changed my approach towards selecting, preparing, and consuming food. Everything is fresh and, well, whole now. I make my own chicken stock, eschewing the salty, processed kinds. I make my soups and chilis from scratch, avoiding the gluten-y store-bought kinds that I can’t imagine eating ever again. I have fresh vegetables with every lunch and dinner, and I take it as a matter of pride that nothing in my kitchen has an ingredient list of more than, say, four or five items.

The jury may still be out on gluten and the masses, and maintaining a GF diet can certainly be challenging and frustrating, but when I wouldn’t trade my GF attitude towards healthy eating for anything.

Friday, May 04, 2007

Can I just say that my timing has always been….ironic? No less than three hours after I posted my last entry on worrying about my father's health and the general nuttiness that consumes my mind, my phone rang.

“Your father’s [thallium stress] test went badly. The artery they stented in August is 100% blocked again and he’s being admitted,” my mother said.

Cue pit falling in stomach and tears welling in eyes. Not again.

Thus began several days of waiting, waiting to see if he would need a triple bypass surgery or if they could re-stent his major artery and leave the other four blockages alone for now. Either way, he’d need the dreaded dye for the catheterization, and his one little kidney still hadn’t recovered from August’s trauma.

Are you freakin’ kidding me? First of all, the man had done everything right: his cholesterol was the lowest it had ever been, he exercised regularly, faithfully took all his meds and statins, even dropped down to a four-day work week since the August scare. All that, and we were told that 95% of the time, stents lasted a lifetime. Of course the man with one kidney and a billion other medical problems was in the 5% of patients whose stents failed within months.

Secondly, what are the chances that the very day I write a post that talks about his health and my tendency to be a little overbearing and obsessive about it he gets this news?

In high school, after eight months of rehab from ankle surgery I made the JV basketball team (and yes, there were in fact cuts!). The day before my first game, I caught the ball awkwardly and because my bones are like twigs, I broke my hand. End of season. In grad school, shortly after I finally recovered from the one-two punch of whooping cough and viral pneumonia, my adrenal system failed. All this happened just as I was settling into the weekend job I adored at the Devon Nicole House at Children’s Hospital—and these are just the first instances to pop into my head.

My father’s timing is even more ridiculous. I could write pages about it, so I’ll just focus on recent events. In August, he got chest pains just after the ferry departed from Hyannis to Martha’s Vineyard, making for a long, harrowing ride. Last week, he felt short of breath and tired again, just as he was about to get on a plane and fly to DC and then Florida for conferences he’d looked forward to all year, events he was leading and presentations he’d labored over. Instead of going to the airport, he went to his doctor.

But there is a first time for everything, and my father’s catheterization Tuesday went better than best case scenario. I can’t even believe I just wrote that in conjunction with him. Better. Than. Best. Case. Scenario. They didn’t need to do the triple bypass, and they used so little dye during the cath itself they could re-stent it then and there, something no one thought they’d be able to do.

Feels too good to be true, but as each day goes by, we’re believing it more and more and we’re inspired by it.

During the long days in the hospital this week, I thought a lot about what I’d write here. I kept coming back to my last post and how my worries and actual events collided like that. It was tempting to bemoan our collective timing yet again, but something stopped me. My father was alive, and a lot of steps went into that process.

He was a ticking time bomb for months, walking around with a major artery 100% blocked and not realizing his stent failed. He was about to fly all over the country. What if he’d had another heart attack and this time it was on the plane? Or in a hospital far away where no one understood his beyond complex medical history? What if he hadn’t called his doctor exactly when he did and hadn’t been able to squeeze in the stress test?

His timing was pitch-perfect.

The more I think about all the near-misses, the plans gone awry and the events missed at the last second, I realize just how much timing impacts my life, our lives. Illness is never convenient and disappointments are frequent, but we’ve made it this far. I wouldn’t change our timing by one second.